Day in Westminster

On Wednesday 29 November, the Association of Medical Research Charities held its first ever Day in Westminster, and Nick Posford was one of 40 charity CEOs taking part. Here are his thoughts on the day.

The purpose of the day was to demonstrate the vital role and collective contribution of the medical research charity sector to policy-makers. Last year, AMRC members invested over £1.6 billion in medical research in the UK and funded 17,000 researchers in the UK. The recently published Life Sciences Industrial Strategy recognises the importance of medical research charities and presents a number of opportunities, set against the backdrop of the challenges and opportunities arising from the UK’s exit from the European Union. Now more than ever it is vital that the voice of medical research charities is heard.

CICRA might seem small in comparison to some of the biggest UK medical research charities, but the importance of AMRC is that it unites the full range of charities and includes many small ones alongside the biggest. This amplifies the voice of all medical research charities and enables CICRA to make an impact beyond our size.

The day started with a breakfast briefing from Lord O’Shaughnessy, Parliamentary Under Secretary of State at the Department of Health, who described charities as the “jewel in the crown” of UK life sciences. (‘Health life sciences’ refers to the application of biology and technology to health improvement, including biopharmaceuticals, medical technology, genomics, diagnostics and digital health). I then attended a meeting with Daniel Zeichner, MP, whose constituency of Cambridge includes Addenbrookes, where we are funding important studies into paediatric IBD. I was able to express directly our concern that the Brexit process should not hinder or negatively impact the important work in research centres like Cambridge, which is helping us better understand crohns and colitis, and the impact these diseases have on children.

I then had an opportunity to discuss with colleagues from charities similar to us the issues they face, and how they support their patients and families. It was great to have the chance to share experiences. The medical areas we specialise in may differ but often for smaller charities like us, the basic issues can be quite similar: lack of public understanding, lack of attention from policymakers, the need for more expertise amongst health professionals, a need for more information and support and crucially, the need for more research and better treatments.

In the afternoon, I met with civil servants from the Medicines and Healthcare Products Regulatory Agency (MHRA) alongside colleagues from Multiple System Atrophy Trust and Cancer Research UK. CICRA and many other small charities benefit from the influence wielded by Cancer Research UK and other large charities. We do not have the resources to employ specialist staff that can fight for patient rights and persuade policymakers, for example, of the need for fast (but safe) approval for new treatments, but we undoubtedly benefit from the fact that the large charities do have those resources and are able to make that case. At the meeting, we pressed the importance for patient care of a smooth transition to any new regulatory regime, and our concern that the Brexit process may delay the opportunity for easier and faster clinical trials with collaboration across Europe, as embodied in the forthcoming Clinical Trials Regulation.

You can see various thoughts and photographs from the day on Twitter under #DayinWestminster